Lyme Disease Initiative Seen as State Model

Lyme disease, the tick-borne illness that has been documented at epidemic levels on the Vineyard, is now the focus of a growing public health initiative that involves Island doctors, boards of health and university researchers.

The initiative, which aims to zero in on prevention, education, and improved data collection, is seen by at least one leading expert as a possible model for the rest of the state.

“I have been working with communities for 25 years trying to get them to do something, and this is one glimmer of optimism,” said Sam Telford, a professor of infectious diseases at Tufts University.

Mr. Telford is part of the steering committee of the five-year study being led by the Island boards of health, with Edgartown health agent Matt Poole and Tisbury board of health member Michael Loberg as chairmen. The study is funded by a $250,000 state-mandated grant through the Martha’s Vineyard Hospital.

Lyme disease is a tick-borne illness caused by the bacterium Borrelia burgdorferi and accounts for more than 95 per cent of reported tick-borne illnesses, according to the 2006 Health Conditions and Health Status report. The disease has a broad spectrum of clinical manifestations and varies in severity and symptoms, including flu-like effects, fever, headache and bodywide itching. It is also believed by many to have advanced stages with more serious implications.

Mr. Telford said 80 per cent of Lyme disease cases happen in June and July because that is when the nymphal deer tick is most active.

The Vineyard and Nantucket have long been known as hot spots for Lyme disease. According to Mr. Telford, the main reason for the Vineyard’s tick prevalence is the immense deer population. The Massachusetts Department of Fish and Wildlife estimates there are 50 deer per square mile on the Vineyard.

“When deer get too dense, ticks get dense as well,” Mr. Telford said. “Each fed female tick will lay 2,000 eggs. I’ve counted as many as 300 ticks on a deer. You don’t have to be a mathematician to calculate how many ticks will be on a single deer.”

Tackling the deer situation is just one prong in the effort to combat Lyme disease. The Island initiative has begun to make significant progress in raising the consciousness of the public and the medical establishment about the disease.

Researchers are starting with the reporting of the disease, which in the past has been spotty. In 2010, there were only 25 confirmed cases of Lyme disease on the Island, according to the Centers for Disease Control and Prevention (CDC). Yet in the summer, Dr. Michael Jacobs and Dr. Gerry Yukevich, who operate a practice in Vineyard Haven, said that between the two of them, they see between 50 and 70 patients a week for acute Lyme disease.

“I’ve been practicing on the Vineyard for about 14 years and I’ve seen hundreds and hundreds of Lyme disease patients,” said Dr. Yukevich.

The discrepancy in reporting appears to stem from cumbersome, inconsistent regulations employed by the CDC and others that often miss Lyme cases. Much of the problem, critics say, lies in the inability to consistently detect antibodies to Lyme — the main confirmation of its presence — through a blood test.

Mr. Loberg said that to be classified as a confirmed case, a patient must have either the telltale bullseye rash or a positive blood test.

Yet on the CDC website it reports that the rash, known as an erythema migrans (or EM) rash, only occurs in 60 to 80 per cent of patients. Dr. Lena Prisco, the lab director at Martha’s Vineyard Hospital, said lab testing can be irregular due to the nature of the disease.

“The test is trying to pick up an antibody. In this disease’s case you have early-stage antibodies and late-stage antibodies . . . the disease is in flux,” she said.

An antibody is the body’s reaction to exposure to Lyme disease. Antibodies for Lyme disease can stay in the bloodstream for months or years, said Dr. Prisco.

Dr. Jacobs said most of his acute Lyme disease cases are clinical diagnoses with no test necessary.

“If you come in with a tick bite and a rash, I don’t need a blood test. It just adds to the cost of diagnosis. More importantly, it’s not likely to be positive within a few days of your bite,” he said.

Mr. Loberg is spearheading the effort to address the reporting problem head-on. “If we can’t get better prevalence data, we can’t monitor our success or lack thereof for prevention,” he said. He researched how much Doxycycline — the standard antibiotic treatment for Lyme — was prescribed in 2010 based on 21 days of therapy, the standard time frame for treatment. He estimated that enough doxy was prescribed to treat 1,100 patients, compared to the 25 confirmed cases. Mr. Loberg said the initiative can use this data to determine the effectiveness of treatment.

Just this summer Dr. Jacobs started the Tick Bite Fast Track for Prevention of Lyme Disease program at Vineyard Medical Services.

June, July are high-risk months for tick diseases.
— Ray Ewing

Patients who have had a tick attached to their skin anytime in the past three days can come in, fill out a questionnaire, and then a doctor or nurse practitioner will review the form. If they answer yes to the five questions, they pay for and receive two tablets of Doxycycline and are on their way. That’s all they will need to prevent the infection within that time period. The office also gives them a prescription for 10 more tablets for future tick bites.

“The objective is not to have people wait to be seen for a complete medical evaluation. We are saving them a trip to the ER or pharmacy. It makes it faster for both diagnosis and treatment, but it’s a very narrow window.”

“But we enforce the idea that if they become sick, they must see a physician, because we are not treating the disease or other diseases that could have been transmitted with the same tick bite,” Dr. Jacobs said.

“These are all very nonspecific without the rash, which is why people think it’s something other than a tick-borne illness.”

Mr. Loberg said one of the major areas of needed improvement is for people to recognize the symptoms and see a physician.

Said Dr. Jacobs: “If someone comes in saying I have a headache, I’m profoundly weak, I have a high fever, my muscle aches, and I never feel this way . . . that’s Lyme disease in the summer on Martha’s Vineyard. But there are a lot of in-betweens and more subtle forms.”

Among the other forms is what many people say is a long-term, or chronic form of the disease. The debate over whether or not chronic Lyme exists is still going on, but it appears that a growing number of physicians are at least entertaining the possibility of its existence. And with it, some say, comes a constellation of more serious symptoms that can occur months or years after the infection, including paralysis or weakness in facial muscles, pain or swelling in the knees and other large joints, and heart problems, such as palpitations.

Dr. Yukevich said if a patient does not see a physician when they have the early symptoms of Lyme disease, their symptoms can worsen and become more difficult and prolonged to eradicate.

“Most academic centers do not think there is chronic Lyme disease,” he said. “But many people on the Vineyard and around the country feel that there is a disease called chronic Lyme.”

Dr. Sam Donta, a consultant in infectious disease at Falmouth Hospital, has been treating chronic Lyme for more than 25 years, including many patients from the Vineyard.

“Regardless of the mechanism of the symptoms, something must be causing the symptoms. Usually it’s a product or products of the infection to which the body is reacting and we are not capable of measuring that particular product or mechanism, so the only way you know is to treat with certain antibiotic regiments,” Dr. Donta said.

He treats each patient individually, isolating each symptom to determine if treatment is working.

“You don’t have a lab test to follow, or a physical frame to follow, and some doctors are not comfortable doing that,” he said.

“The fact is, with the current test, you can’t know if they do or do not have Lyme disease,” he said, referring to chronic Lyme patients. “It’s misleading to say that a negative test means you don’t have Lyme disease.”

Mr. Loberg agrees that a better test is needed for testing prolonged symptoms.

“We need a good test to differentiate between those who have symptoms that persist even after the disease has been eradicated, and people who have symptoms from other related diseases,” he said.

All doctors agree that treatment and diagnosis of the different stages of Lyme disease are fickle, complicated and require more research.

Finally, leaders in the initiative want to focus on prevention and education.

“If there weren’t long-standing symptoms, I wouldn’t care. If it was just the summer flu, I wouldn’t be spending my life working on this. If you don’t manage the initial exposure to Lyme disease, it can get much more serious. We want to catch it early,” Mr. Loberg said.

To that end, two groups the initiative wants to focus on are young people and tourists.

The initiative is working with the high school to incorporate awareness education into the curriculum. As for casual visitors, Mr. Loberg said they are looking for effective ways to reach them, such as on ferries, transit buses and in places of tourist lodging. In a questionnaire that went out last year, 63 per cent of tourists did not know that tick borne-illnesses were a threat to health on the Vineyard, and 84 per cent had received no tick-borne illness education in the past three years. The initiative has shower pamphlets describing a tick check and symptoms of Lyme disease which they are giving to hotels and bed and breakfast inns on the Island.

“It’s not easy to inspect your whole body by yourself. You need a friend,” said Dr. Jacobs. “And not just any old friend, a good friend,” he laughed. Only a good friend, he suggested, will want to check the areas identified as high-risk: armpits, back of the knees, back of the neck, around the ears and upper thighs.

He and others emphasize the importance of protective clothing and insect repellent in avoiding ticks — simple precautions, but highly effective.

Mr. Poole, too, has been wearing special socks, made of commercially-produced fabric embedded with tick repellent, good for 70 washings.

“All ticks have to do is encounter the fabric with a brief walk,” said Mr. Poole. “They may crawl up to your leg or torso but die shortly after and don’t have time to attach or transmit the disease.”

Basics Clothing Company in Oak Bluffs, Brickman’s and SBS in Vineyard Haven now carry the socks. Mr. Poole is also trying to have the repellent permetherin stocked locally, which can be sprayed on yard shoes, landscape clothes, work pants, etc., and is effective for up to six washings.

“Landscape management, deer herd reduction . . . all those things are not immediate. But with repellent, as soon as you wear it, your chance of getting bitten is immediately reduced,” said Mr. Poole.

Added Mr. Telford, “We need more projects like the one on the Vineyard. People there have a lot to be proud of.”

“My main mission is to find some way of making places like the Vineyard a better place for my grandchildren to visit,” he said. “It’s now a place where one has to take precautions when visiting.”

The deer-huggers have a massive PR campaign to divert attention from the deer and to blame the epidemic, for instance, on mice, fox shortage, etc. Yet as renowned entomologist Dr. Kirby Stafford has pointed out, the deer are key to the reproduction of the tick. This is because an egg-laying adult tick requires a sizeable mammal for a large blood meal. The adult tick will not feed on a mouse. 90-95% of adult ticks feed on deer. As noted by Professor Telford, ticks from one deer produce hundreds of thousands of eggs per season. These develop into the immature ticks which feed on Lyme-infected mice and us. The recent fox study was very flawed because it lacked actual field data, as noted by Dr. Maria Diuk-Wasser on NPR "On Point" 7/3/12.

There really needs to be more public education. I'm originally fron the Island, but live in California now. I've had a summer flu that is going on over 3 weeks, i found a tick on my head when i was in West Tisbury 9 weeks ago. I have lost my sense of smell and taste, have headaches daily, cough and have joint pain, all new stuff. I knew nothing about Lyme, except for the word of mouth from Island friends to "check yourself for ticks". I've been back in California for 7 weeks and I assume I need to go to see a doctor, but since Lyme isn't a norm for California, I bet I'll have a hard time convincing a doctor of the disease. Wish I was mor informed when I was on the Island. There should be flyers and posters at the SSA terminals and the airport, for a start. How does that saying go, " an ounce of prevention is worth a pound of cure"?

o Shaun McCarron:
I am sorry you are feeling badly and hope you go to a Lyme literate doctor soon. Lyme Disease and coinfections are indeed common in California. Please check http://www.lymediseaseassociation.org and California Lyme Disease Association (CALDA) for information and doctor referrals. Good luck, and I hope you're on the track to recovery soon.